If you wish to sign on to this letter, send an email by 5 PM Monday 12/15 to IHSSconsumersuni, put SIGN ME ON in the subject heading with your name and an affiliation if youd like to put one in the body of the email. WHAT IHSS CONSUMERS AND PROVIDERS WANT FROM THEIR LEGISLATORS IN 2015! ***RESTORE 7% CUT IN HOURS! ***Provide enough SSI/SSP monthly grants to live on! ***Reduce Share of Costs that take SSI/DI to an unlivable level. ***Restore the Medi-Cal Buy-Out! ***Stop complex timesheet procedures that punish workers with delays in money for rent and food for making one wrong move!*** What about us? Wasnt In-home Supportive Services about keeping Seniors and People with Disabilities out of nursing homes and keeping us in our own homes and with our families? Remember when seniors and people with disabilities had enough hours of care, enough money to live on, our attendants got paid on time, and NOT A SINGLE-FAMILY was harmed? Well, we want to go back to those policies; we want a policy change that: 1) Insures that any IHSS cuts in hours (7%) be are restored before any other changes to IHSS can be considered 2) Insures that our SSI SSA Living Allowances are restored before any other changes to IHSS can be considered except the 7% IHSS restoration. 3) Provides for a Return to Optional Criminal Background Checks by choice only! 4) Eliminates unpaid orientations so that our providers arent burdened and made to feel threatened. 5) Gives our social workers more time to return our calls or to ENROLL AND PAY OUR PROVIDERS ON TIME! 6) Insures that absolutely no one is harmed by the new U.S. Department of Labor laws--NOT ONE FAMILY, person with a significant disability, worker, or person on a waiver is harmed. 7) SIMPLIFIES TIMESHEET PROCEDURES that stops terrorizing providers by not being paid on time, making them unable to put food on the table, or pay their rent or utilities if they make one wrong move on EXTREMELY COMPLEX timesheet procedures. When the Governor, the Federal Government and our California legislators reviewed IHSS in the past, the intent was always to help seniors and individuals with disabilities live in the least restrictive setting with the help of IHSS workers who are either family members or non-relative providers. That’s what the Lanterman act said. That’s what the Americans with Disabilities Act said, and that’s what the Olmsted Supreme Court decision said. This is also smart economics. The IHSS program is not only humane--allowing seniors and persons with disabilities to remain in their homes and communities--it is cost effective. The alternative to the IHSS program is generally a nursing home at three times the annual cost. To force people into nursing homes is not only being penny wise and pound foolish, it is cruel and unlawful. Sadly, there has been a tidal wave of change, bringing in differing voices who are dominating the IHSS conversations in Sacramento often in the guise of reducing costs. But the cost reductions will prove to be illusory and the voices of those who are directly affected by the changes are being heard too little. Our concern is that slowly, but surely, the voices of the IHSS seniors and individuals with disabilities (who are by definition impoverished) are getting drowned out and are no match for these new forces that are taking over. Were afraid we are seeing the slow but sure death of the backbone supporting our loved ones with disabilities: enough money to live on and enough hours of care. As one support after another is kicked away from those on IHSS, we are concerned that soon their lives will collapse like a house of cards. It’s getting very hard to live on SSI/SSP and disability income for beneficiaries and IHSS income for providers because of the many changes in the last five years. Weve been sending out our distress calls for years but nobody seems to be really listening. Since these changes, providers are forced to go to weekday unpaid orientations. Some family providers have to go with severely disabled children, because they have no one to care for them. Other IHSS providers lose full days of pay from other jobs while they must pay from their scarce or nonexistent resources for costly criminal background checks, and they often wait weeks or months for their first paycheck. Extensive and expensive criminal background checks are required of the same family members who were providing for the disabled individual before they were qualified to receive services under the IHSS program. This scrutiny of providers who have been caring for their own family members for decades is being urged largely in the interests of saving money by reducing fraud. But there has been no significant fraud in the IHSS program because the allegedly massive crime wave among caregivers simply does not exist. If for safety, a consumer wants a background check, that check should be available on a voluntary basis and paid for by the program as in the recent past when criminal background checks were optional and not mandatory. One size does not fit all and by requiring criminal background checks of everyone, the overall cost of the program is being increased and the effectiveness of the program is being reduced. Criminal background checks should be for those who choose them. These unpaid orientations and mandatory criminal background checks do not help, what they do is create hurdles, hardships, delays, and costs that make providers to not want to work for us. And in the last few years, our hours of care have been cut by 7% and those providers who have been loyal to us have seen their paychecks shrink. One of these attendants signing this letter has been getting over $150 less each month for the last five years! Changes like these are making it extremely hard for those on the IHSS program to make it on our own in this world. What is the IHSS program, if not to provide service hours of care to seniors and people with disabilities to live at home in our communities? Until these hours of care are restored, nothing else should be considered. Caring for seniors and people with disabilities is the reason for the IHSS program. As the focus goes away from the survival and hours of care of seniors and people with disabilities attempting to live in the community, the IHSS program is getting reshaped into a corporate business model! But this was never the intent of the legislature or the Congress for Medicaid funded IHSS home and community-based services. This year in California, when revenues were better and program cuts were to be restored, the legislature forgot about seniors and people with disabilities living on low SSI benefits. Federal cost-of-living adjustments (COLAs) have been non-existent in 2010 and 2011 or extremely minimal for years as the federal baseline SSI grant. The State Supplemental Payment (SSP) portion of the monthly SSI grant has been significantly and consistently reduced for more than sixteen years, and during the recession in 2009, the SSP payment of the SSI grant was reduced to the federal minimum level allowable. When the California economy went bust, in about 2007-2008, people on Social Security lost a large contribution from California to their share of cost for IHSS, (the Medi-Cal Buy-Out of $600 was removed and calculations of share-of-cost have become overly complex and burdensome), taking away hundreds of dollars and making it extremely difficult for some to continue living in their own homes. A friend of ours, Hugh slipped into a nursing home around this time, because his share of cost became over $900. We did everything we could think of to help him avoid this. We saw him, a few months ago, and he told us he lives in a space about 10 x 12 and didnt seem to feel he could make his way out of a nursing home again. Another friend, Laura, stayed after a funeral for six hours because she didnt have the $3 to pay Access Services to drive her home--she had to wait for a dial-a- ride. We didnt hear anyone speak about this in Sacramento. Op-eds to newspapers and calls to television news reporters to do a story on how seniors like Hugh were now losing hundreds of dollars to live on their own were simply ignored. We made sure our requests – to pay for criminal background checks, to pay workers on time, to give workers flexible orientation scheduling and options, and arrange to give spouses and parent providers Social Security credits werent too expensive, because even if nobody else does, we care about revenues being available to restore people’s living allowances and hours of care. Allowances and hours of care that keep us in our homes! How does someone live in the community on SSI of $877.40 a month without a family to house them if they cannot get scarce section 8 housing for which there is a long waiting list that can takes years to get on or find a safe and accessible housing rental. Senior citizens and others on Social Security benefit programs were hit terribly hard when California reduced the monthly SSI State Supplemental Payment (SSP) amount to the federal minimum allowable. The federal SSI benefit amount is barely above $600 a month for an individual without the addition of the extremely low monthly State Supplemental Payment to the SSI grant for anyone to live on! For many years, the state absorbed the federal cost-of-living adjustment against the state deficit! For disability and Social Security beneficiaries not on SSI, the Medi-Cal Share-of-Cost (SOC) rules jeopardize their ability to access services like IHSS because their incomes are needed for necessities, yet to get Medi-Cal and IHSS, the Share-of-Cost is so staggering it prevents access to essential services and pushes people into institutional care facilities. Some seniors and individuals with disabilities find out that the Medi-Cal Share-of-Cost (SOC) lowers their income below those even on SSI benefits. Certainly, people without families to house them or section 8 housing are being robbed of their rights under the Olmsted Supreme Court decision because they cannot live on these amounts of money with Californias true cost of living! If one lives alone, like Hugh did, how do they survive on these pitifully small living allowances and cuts in our Medi-Cal-based IHSS service hours of care? What is being lost is the slow erosion of IHSS home and community-based services and disability benefit income supports that keep us out of institutions in California? There is a woman named Angela in a petition we are circulating. The title of the petition says “Ill die if I go to a nursing home.” She is fighting against going into a nursing home because her state is slashing budgets. At the rate we are going how many Hugh’s and Angela’s will slip quietly into nursing homes? Snoopi Botten, a disability artist, is reaching the limit of what Ohio will pay for his hours of care. Whose turn will it be next to write a petition like Angela’s begging not to go into a nursing home? Or will some take a desperate approach like Snoopi who is instead threatening to kill himself rather than be admitted into one? And the Department of Labor has passed overtime regulations which have unintended consequences. These new regulations will cost the states millions and it will give overtime pay to some workers. Some states dont think they have enough money in their budgets to afford it -- and one needs to wonder if it isnt true, because many states still havent restored the hours of care to seniors and people with disabilities they had to cut in the financial downturn when they were slashing budgets. One of the remaining unintended consequences in California, where there was a brilliant mitigating compromise to lift the cap to the current maximum hours that someone can work, under the new Department of Labor overtime rules. This will help many high hour workers, but leaves some families and individuals behind with absolutely tragic results. There are unimaginable unintended consequences for some family providers who care for more than one person with a significant disability that puts these families’ providers above the cap. And people with severe disabilities on waivers and not on waivers, can see the delicate balance that have kept them in their homes disrupted to the point of collapse. One mother put the dilemma in stark relief when she said ““I have a 21 year old son and a 13 year old daughter. …This would be a massive financial blow to my family which has been struggling financially for years, but more importantly to bring in a stranger to care for either one of my children and their myriad and private needs, is incomprehensible. These are family members, spouses, decades long devoted caregivers, friends and lovers who could seldom get respite because the people who would be replacing them, at worst, might do something awful, and at best may really not know the first thing about the mystery of caring for the people they love. Some of these family members have extremely medically and psychologically complex conditions. They cannot just be handed off to anyone. We are sending you this sign-on letter because most of us are too poor or too busy caring for people to get to Sacramento. As you consider legislation for 2015, please remember that In-Home Supportive Services (IHSS) was supposed to be about keeping seniors and people with disabilities out of nursing homes. And IHSS was for keeping people in the community and at home with their families. And we are asking you to remember that In-Home Supportive Services (IHSS) is a health and human service designed first and foremost for people to live independently in the community and many with their families. Please dont look the other way and fund other costly initiatives until the hours of care for seniors and people with disabilities are returned to their previous level or more, their paltry incomes restored, and for heaven sake dont destroy A SINGLE FAMILY, hard-working provider, senior or person with a disability, or the strong bonds between workers and people with significant disabilities! join the IHSS consumers union on Facebook https://facebook/groups/IHSSConsumersUnion2/ Never doubt that a small group of committed people can change the world. Its the only thing that ever has. - Margaret Mead
Posted on: Sat, 13 Dec 2014 08:09:19 +0000
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